Living with CRPS/RSD

Thursday, May 26, 2011

Well, I've tried to keep things kind of tame in my blogs due to my most recent position. Well, they "terminated" me yesterday, so now I feel free to talk about things more freely.

I'm not sure how things will turn out with my health in the near future. The good news - the previous employer isn't contesting unemployment and they put that in writing so my benefits will start that much sooner. I had to move up a pain doc re-check so I could get the appointment while I still have insurance. (Going to try to get my dental appointment moved up too)

I won't be able to afford the COBRA, and I already know I can't get private insurance from when I was divorced a few years back. So, not quite sure what I'll be doing about all my meds. Guess that means I better get off my duff and get a job with benefits right quick!

So the stress isn't helping matters, but I'm trying to stay in today and trust in God. After all, that's all anyone can do!

Monday, January 10, 2011

It's winter. While the snow is beautiful, the weather change is not! I couldn't figure out why all of a sudden I was so exhausted and needed to sleep for almost 18 hours. Wasn't like I'd done anything to "deserve it" so to speak. Well, the storm is here, and I can sure feel it. So not only do I act like a human barometer, but I'm also a human heating pad these days!

Saturday, November 27, 2010

I saw my pain doc the beginning of this week; but just for steroid injections in my thumbs and wrist. With the cold, this time of year at times they're almost useless. Given all the typing/mousing I have to do, they come in pretty handy when they're working! He remains pleased with my status. Me too. Well, it took me a year and a half to get off the d*mn oxycontin. That totally sucked. There's positives and negatives for everything I guess. On the oxy, the withdrawal sx's sucked, and the oxycodone was only occasional for breakthrough pain. And there was less constipation. I'm glad to no longer experience the withdrawal sx's from the oxycontin, but I practically live by the clock on the other. And depending on what manufacturer the pharmacy has on hand, well the results widely vary. Well, then for everyone who's ever said I'm full of it, you're right! LOL! All in all I'm pleased with the results. If things get worse, we discussed a booster infusion. Money's been really tight, so clear communication with the insurer I have now will be paramount. I can't say enough for all my friends (actual & virtual!) and family and providers these past 2 years -my life wouldn't be possible without support from all of you!

Monday, December 29, 2008

I just saw my pain doc for my first follow-up today after my last infusion on the 9th. I'm still getting wonderful relief. Dummy me though decided to shovel/chop the ice at the entrance to my driveway the day after Christmas, so I've been sore from that, but nothing ibuprofen couldn't help with. Most of the time my pain is on the low end (one on a one-ten scale with 10 being the worst.) Sometimes it's a two. I've started to titrate down on the oxycontin, and the withdrawal symptoms are sometimes worse that dealing with the pain. My doc is very understanding, trusting, and willing to let me use my own judgement on how best to do it. He gave me a guideline, and most of the time I can take 20mg at night instead of 30. Once I do that for a week straight, I'll lower the a.m. dose. All in good time. He's okay with waiting until it gets a little warmer too, since bitter cold seems to cut right into my back. Anyway, I feel great and very optimistic! I'm anxious to see what warmer weather brings!

I also stopped taking the Procardia XL on my own, without dr. input/advice. He wasn't concerned. It was prescribed the very first time I saw him and he diagnosed the CRPS. It was to improve the circulation, by keeping the veins dilated, etc. (something like that). Anyway, I seem to have had more swelling than usual in my feet since the last infusion, but I don't want to assume that it's from the infusion. I've had trouble with this before. I'll be seeing my regular doctor the first week of January sometime, and we'll see what she thinks. My hands have also been very swollen the last week as well. It wears off later in the day. I know I've had some saltier foods with the holidays, so that may be it. I've been on a blood pressure medicine that includes a diuretic for years because of fluid retention with my high blood pressure. So, I'll let you know what I find out.

I will be checking with my regular doctor about my depression. At the moment I don't feel depressed; I think the holidays and time off from work have helped. Even though my pain is down so low, with the meds and their side effects as well as withdrawal symptoms, the mornings are still difficult for me. Hopefully I'll be able to find a routine that works so that I can get my butt out of bed.

I must say, this has definitely helped my love life! Even though I will admit that I'm one of the people for whom sex had the added benefit of giving some temporary relief to the pain - about 30 - 45 minutes or so. Enough about that!

Sunday, December 14, 2008

The third infusion was done on December 9th. We had an ice storm early that morning, and I wasn't sure I would be able to make it. Sheer determination prevailed, and the Iowa road crews had done their jobs and I made it. Of course, I wasn't able to get my car until 2 nights later! Everything worked out though. I didn't really have any strange feelings with this infusion - mostly just felt like I took a nice nap. Wasn't too awfully difficult to come out of it. It was funny watching the video I took, because I asked the doc a question about his Christmas plans, but I don't remember asking it, and he answered but it was obvious I was out by then! And when I woke up, I had the monitor leads on my chest too, which he put on after I was under the anesthesia. I was dizzy as usual until I got home, but was able to stay awake all evening, and really didn't feel like I'd had anything different go on that day. I'd say my pain was at a 2 when I arrived for this final infusion, and was between a zero and 1 when I left. I slept fine all night, and went into work the next day at noon, and worked until 8:30 that evening! This was the first week I've actually put in a full week - just over 40 hours - since May of this year. My energy is returning, and at times I'm usually able to go 12 hours or more until my next dose of Oxycontin. I've been on 30mg twice daily, and just this evening (after going 15 hours since my last dose, I decided to only take 20mg for tonight. I will speak with the doctor's office tomorrow to get the "official" titration schedule. He also wanted me to call and let him know how I felt.

One of the things I've noticed is that my senses of smell and sight have been slightly altered since I started. My smell seems a little keener - not that there's always something there to account for what I think I'm smelling, mind you! And I seem to be seeing things I hadn't noticed before.

Of course, everyone who knows me knows that my memory has been affected by the CRPS, as well as the meds. I'm hoping that improves as well, by I won't hold my breath on that. It would be nice, but I'm more than content with the pain relief.

While total pain relief would have been awesome, I am so happy with this result. Given that so few of these have been done and that I'm my doctor's first patient to have the infusions, it's impossible to say what might happen, and whether I have achieved maximum benefits yet. At any rate, just to have worked a full week has been an absolute blessing.

I know that all this could not have been possible without God's love, and the prayers and support from family, friends, coworkers, and strangers alike. I am truly humbled. Thank you from the bottom of my heart.

I may not blog as often, but plan to keep everyone apprised of all developments with my CRPS.

Wednesday, December 3, 2008

This infusion went much better. No weird "trapped in a vortex" feeling. The only word I can come up with to describe how this one felt is "swirly." I was in a much more isolated and quiet area this time. They have these really nice private recovery rooms clear in the back of the surgery center! Private bathrooms, everything. And I tricked the nurse who was so gung-ho about following surgery center rules. I rolled up my pj pants above the knee, and pulled my camisole down around my waist, and covered it all with their little scratchy hospital gown. I insisted on keeping my glasses on (told her they let me last week, which they did), and tucked the silly little hair hat into the gown pocket. And my doc was just fine with it and got a good laugh out of it too! So this footage was a bit different. The last time i was in a recliner, sitting up fairly well, and i opened my eyes briefly and frequently. This time I got to lay in a bed and the doc moved the IV machine into the hall so the beeping wouldn't bother me. You can tell it's a better experience just by looking because I barely move the entire time, and I think I only open my eyes a couple of times.I can already tell that because I'd started to regain my strength and was already feeling better, I was able to move around earlier this time and have been out of the bedroom and awake since just before noon today. So tomorrow going back to work will not be so difficult. I believe that God works in my life, and the little "freak" snowstorm today that ended up cancelling the staff meeting at work, and the class I was supposed to teach from 4:30 to 7:30 this evening.So, one more infusion to go - December 9th at 1:00pm (or later, as has been the case!)

Thursday, November 27, 2008

I am a 45-year old single working mother. Still have one child at home. I love them both dearly and can't imagine life without them. I consider them my best accomplishment in life! I've been divorced twice. I spent over 10 years working in the chemical dependency field, and am still certified as a drug and alcohol counselor. I now work in the field of prevention, teaching curriculum in the schools, doing afterschool programs, and working with adult community coalitions. I love it, and I can't say enough about the support I receive from my coworkers and director. I'm sure I would have been fired from any other job. These people are the most supportive, understanding and caring people I've ever worked with.

How'd I get it? Oddly enough, helping my now ex-husband move a couple of log piles so that we could have some landscaping done. Moved them and re-stacked them one day, and moved them back and re-stacked them the next day. My hands have always been on the weak side, and I've had carpal tunnel surgery on the right, and a cyst removed from the back of my right wrist twice. Had a cyst removed from the back of the left wrist also. So, I was really careful, and didn't pick up anything very heavy. I noticed that about 3 days later my hands were both really sore, and a bit swollen, and I figured I'd overdone it. So, just kept taking ibuprofen. My left thumb, however, continued to hurt. A little at first, then quickly became excruciating. I was unable to do anything with it - couldn't let it touch anything, run it under water, do my buttons, open doors or hold anything. By the way, bungee laces are the bomb! I saw my own family doc, who is a wonderful MD. She figured it was deQuervain's tendonitis, and we splinted it for 6 weeks. No help. So we kept it splinted another month or so. (Hard to remember at this point.) I saw a couple of doctors, with different results and again no help. Went through a long series of medications that also did not help. Had a bunch of steroid injections right in the old thumb. Yes, they hurt like you-know-what. First specialist considered me a bother, and absolutely would not prescribe narcotics. Keep in mind, I was working as a counselor, and was responsible for doing all my own case notes. Typing was killing me. So, forget that guy. Went to see the surgeon who did my carpal tunnel. Being a surgeon, he wanted to fix my carpal tunnel, and just didn't know what to think about "that thumb thing." I told him it was NOT carpal tunnel. He assured me that when I'd had enough I'd be back to schedule the surgery. He definitely needs to retire. So, I called my family doc back, in tears. I've known her for a very long time, and really trust her and her judgement. Asked her to refer me to someone who would actually listen to me and believe that I know my own body the best. So that was the beginning of finding the solution. She sent me to a rehab dr, another md. Many tests later, they couldn't do anything but rule out everything. So, sent me to OT to regain my range of motion, do some strengthening. That did work, and even the pain began to lessen. The very last day of OT, she ran me through some movements, and then did a "thumb grind." I about went through the roof. She said there is definitely something not right, and sent me back to the doc. She had me see the hand surgeon in her office. Who of course could also not figure anything out. So, they sent me to a pain doctor. Hallelujah! This man, Steve Quam, took 15 minutes to listen to me, and promptly diagnosed my with CRPS. Gave me my first stellate ganglion block. I regained the circulation in my hand, and it stopped being purple. (My favorite color - just not on my hand!!) I ended up having 5 more. They stopped working as well, and on June 4th, after my CRPS had begun to spread into my left shoulder blade and the back of my neck halfway up my head, he decided to do a cervical block - the back of my neck. The needle went in fine, but try as he might there was not enough room for him to move the needle where it needed to go. (I'm very small.) So, we did the ganglion block through the front of the neck again. The next day my lower back was killing me. This went on for a week or so, and I ended up thinking I had a kidney stone! CT scan later, nothing significant. (Well, a big ovarian cyst that went away on its own, but anyway.) The attempt at going in cervically had set off a huge flare and spread. It took months to calm down.

Currently I take an extra blood pressure med to keep my veins open to enhance circulation, an antidepressant for the anxiety that started in February, an NSAID for the arthritis that has developed in both of my large thumb joints, a multi-vitamin (I'm 45 and have terrible nutrition habits!), and 30mg oxycontin twice a day.

I've had one infusion of low-dose ketamine, and am anxious to see what the end result of the series of three will be. It's too early for me to retire, and I feel like I still have so much to offer.